Monday, January 31, 2011

Day 9 Updates

Eli lost 1 IV yesterday, and the other is hurting him.  So they are going to discuss putting in a PICC line today.  He has had 1 negative blood culture and the other one was negative so far (as of yesterday) but not guaranteed until later today.  So hoping we get our 2nd negative!  His anticoagulant level was still low as of middle of the night so they are upping his meds by 10%.  He also went down and had another ECHO this morning so we are waiting on those results.  They will also be doing labs today to do some genetic testing for immune disorders.
He's smiling and has been playing.  He gets tired still a bit quicker than normal, but isn't falling asleep constantly!  It's nice to see those things returning to normal!

Bob and I are ok.  We are exhausted.  This has been a very draining month for us.  We have so many amazing friends who have made sure that we have food, clothes, books, etc.  We are so blessed!

Our older 4 are doing well.  They are back to school today.  Emily missed quite a bit of school last week and she was super sick. 

We will update more later today as we know the full plan for the week.

Sunday, January 30, 2011

Quick Updates Day 8

Eli had an ultrasound Friday night after surgery.  It checked his upper neck and shoulder/chest area.  It showed clear.  He had his ECHO Saturday morning to specifically check his heart and there was a moderate sized blood clot in his heart.  Lots of phone calls made and doctors talking and they decided to start Eli on anti-coagulant therapy for a minimum of 3 months.  There will be alot of lab work and alot of ECHO's during the whole time, but especially at the beginning while trying to get to a good therapeutic level.
A snow storm is supposed to be coming to KC late Sunday/early Monday, so after alot of talking with the doctors and nurses Bob and I ran home late afternoon.  We had dinner with the kids and got some things packed up and are heading back up this morning for the rest of the stay.  Eli is expected to be in KC for 2 to 4 weeks.  A loooong road ahead.
We will update more soon!
Here are a few pictures from the last few days.
Playing Day 5

View out Eli's Window

Tiny morning Day 7

Friday, January 28, 2011

surgery done

Eli did well in surgery. They were able to remove the port, although they cant tell if they got the blood clot. He woke up well and had a bit of trouble with his o2, and he did spike a fever, but both corrected fairly quickly. He's in his room right now and will be going down to radiology at 9pm to make sure no blood clots. He will need another echo as well, later.
Sorry for such a short update but i'm exhausted. Moore soon.
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contact information / send eli a card

To send eli a free card go to
Click the link "for patients and families"
Click the link "send a card"
Choose your design and write your note.
Room number is not required just 1 to 2 years of age and Elias Tomkins

Our current mailing address is
Ronald mcdonald house
C/o heather moore / robert tomkins
2502 cherry st room 8
Kansas city, mo 64108
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day 6

I apologize for the lack of updates but we havent had computer access. Eli's labs are still coming back showing the infection going strong, his blood counts are still low as well. Eli will be going into surgery today at 1pm to remove the port and hopefully remove the blood clot. They will be running scans to keep track of where the clot is. We will update during the day as we know more. Keep the prayers and positive thoughts coming more than ever today please.
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Wednesday, January 26, 2011

PICU Day 4

Eli's heartrate and respirations remain high.  His port stopped working last night.  They are thinking that the blood clot is now obstructing the catheter.  They ended up switching his antibiotics to J tube just for the night so they can figure out what they want to do next.  They aren't sure if they want to do more meds to try and break up the clot or if they simply want to remove the port and try to remove the clot at the same time.  There will be a meeting this morning between the night shift docs and the day shift docs.  We have so many mixed feelings about everything happening right now. 
He ran a fever once overnight as well, but it came down easily with tylenol and hasn't come back.  He will be taken off of his feeds at 8am, but will still be given pedialyte by J tube to keep him hydrated.  As of right now they don't have a working line so IV fluids aren't possible.
We will try and update more today as possible!

Tuesday, January 25, 2011

Morning Rounds done

Docs rounded this morning.  Eli respirations are still really high.  The 2nd culture came back again positive in the port, for serratia.  The antibiotic isn't working so they are calling in infectious disease.  They also got the rest of the results from the ECHO.  There is a blood clot that has attached itself to the end of his port in the right ventricle of his heart.(if they hadn't found this it could/would have kept growing and could/would have fallen off and could have immediately killed him)  They can't get a new line in until the infection is under control.  They are trying some meds to see if they can keep the clot from growing.  They are trying to decide how to handle breaking up the clot, since he will need surgery obviously.  So we are waiting on the blood clot team to come and decide what they want to do on their end.
He's exhaused and breathing super fast, his heartrate is still up, temp gone, trying to wean down his day O2 today to see how he does. 
Will update as we know more.

We are just soooo thankful that we happened to be in KC at the perfect moment, at the perfect time.  I truely believe it would have been a very different outcome if we had been in Wichita.

PICU Day 3

Eli had some blood pressure and oxygen issues yesterday.  By last night his BP and O2 were better but his respirations were super elevated.  We haven't gotten the results of his ECHO yet either.  All of which are super frustrating.
Hoping to get some solid answers today when the doctors round.

We don't have phone signal or our laptop.  We can't dial long distance from the hospital phone.  So we are pretty much cut off from the entire world.  Once in a while I can sneak out and use a public computer assuming 500 other people aren't trying to use the ONE computer available.  We know that everyone is anxious for updates but it's not something we can provide alot of right now. 

We will update when we can.  Like always thank you for all of the love and support and prayers!  Keep them coming!

Monday, January 24, 2011

PICU Day 2

Eli had trouble last night keeping his blood pressure up so they gave him dopamine.  His lab came back showing an infection in his blood.  They are rerunning some more labs to find out exactly what kind of infection.  He's on antibiotics.  Trying without the dopamine today to see how he might do.  His BP did drop, but doc came in and messed with him and moved him a bit and it went back to a better level. 
They will be finishing up his ECHO soon. 
Lots still going on.  He's resting.  Temp down with meds, sleeping alot, still on O2. 
We are worn out, feeling very disoriented, kind of the deer in headlights concept.  Paula, Eli's nurse, will be going  home today so it will just be Bob and I here in KC. 
We will update as we know more.

Like always we are soooo thankful to everyone for all of the love and support and prayers.  Please keep them coming as Eli is definitely not out of the woods.

Sunday, January 23, 2011

Eli crashed

Saturday Eli ran a bit of a fever, by night his heartrate was high.  Doc said ER.  ER said virus go home, and that his KC appt wouldn't be a problem.
Eli had an appt in KC on monday.  His nurse and I brought him here.  His heartrate was a bit high, O2 sat a bit low.  Got here he fell asleep.  Paula and I were watching TV.  His monitor starting beeping.  We went in his entire body was tight and shaking, and he was grunting and couldn't breath.  We kept turning his oxygen up and he kept dropping I called 911 while Paula attended to eli.  We had our O2 up as high as we could go.  It wasn't enough.  Eli turned blue, then gray.  It was bad.  Tons happened.  So many people and fireman and paramedics.  Eli was rushed to childrens mercy immediately into a trauma room.  people like i have never seen.  he couldnt' breath.  his blood sugar was really low, then really high.  his white blood count, red blood count, hemoglobin and iron were all very low.  he was struggling.  it was a flurry of people bagging him and tons of meds and tons of everything.
long time passed.  eli is "stable" at the moment.
they think he has a whole body systemic infection.
he's been transferred to intensive care.  bob made the best time ever to KC.
at this point we have NO idea.  it's uncertain what's going on for sure, waiting on labs.  his little body is exhausted and this isn't something he was ready to fight off. 
we don't have our laptop here.  we are at the ronald mcdonald computer right now.  our cell phones hardly work in the intensive care.
we will update as we know more.
please pray.

Thursday, January 20, 2011

Day 19 resolving issues?

We have woken up to day 19 in the hospital.  Yesterday afternoon the doctor came by for rounds and informed us that they wanted to do surgery on Eli on Thursday.  The nurse says it will be sometime between Thursday and Monday, the doc said Thursday.   HMMMM.  Nobody talked to us about this.  Apparently they want to do a spinal tap and a muscle biopsy.  We started asking questions.  He's like I don't know you need to talk to the surgeon and the neurologist, haven't they been in.  Umm no.  Nobody comes in and talks to us.  We've been waiting for the surgeon to come in for days now about Eli's tube and stoma.  So we are left with tons of questions and no answers.  Come 6:30 we hadn't seen anyone.  The nurse calls the surgeon.  The surgeon says it's to cold and the roads so she isn't coming.  She also says we don't need to change the tube size even though everyone had already agreed that we did need to change it.  Mind you the night before the surgeon didn't come in or return her calls because apparently she was to busy.  No word from the neurologist at all.  So another freaking day we make ZERO progress and are left in complete limbo.  I can't believe the insurance company is willing to pay for all of these days where the hospital is just holding us because all the speciailists are to busy to get in and do their part.  So we requested a patient advocate, apparently the hospital doesn't have these, so they gave us the house supervisor.  She is supposedly going to take all of our complaints and problems and present them up in a written letter/email thingy.  The 2 options we said are either they get in here do what they need to do, communicate with us and get it done, OR transfer us.  She said she has no control over what actually happens but that she can obviously present it and make slight suggestions.  So we wait and hope something gets done. 
We didn't want to cause problems and strain relationships BUT it's 100% unacceptable to stick us in this hospital room and leave us for 19 days now.  It's not fair to ask our doctor questions and have him say ask the other docs, and then the other docs never show up, never call, never nothing.  Eli is our priority and something has to be done.
So we aren't sure how today will end up going but I think it's going to be an interestingly long day.
We will update as we know more.
Eli working on standing during physical therapy day 18

Video of Eli laughing at Bob "playing" football. 
Loving the sound of tiny mans laugh!

Wednesday, January 19, 2011

Tuesday, January 18, 2011


Yesterday was a mess.  The meeting ended up being 9 people and Bob and I.  They all had an agenda that Bob and I did not share.  Alot of conversation.  Tests discussed that should have been done in the last 9 days before.  Nobody could give an answer on TPN and IV fluids other than long term it can hurt the liver.  We haven't been on it long term and weren't asking for it long term.  We were asking for it until something else could be figured out.  We asked for a transfer, they said no.  We asked to go home, they said no.  We were informed if we signed out AMA that it would be reported to SRS and that insurance would deny his entire stay's bill.  We will be calling insurance today to discuss all this with them.  We will also be calling another hospital and seeing if we can back door a transfer with another hospital and with insurance.  It's not fair to trap us in a hospital that admits they don't know what's going on and they don't know how to fix it.  Bob and I walked out of the meeting around 3hrs into it.  They magically decided to run a 24hr stool test to find out if his body is dumping calories and fat and protein and such.  They have also slightly increased his IV fluids.  Currently he's sleepy.  He didn't pee for 12 hrs which is a concern.
I was beyond upset.  We are already losing our son to this horrible disease but to ALSO be losing him to incompetent and arrogant doctors...that's just unacceptable.  For 3 days we got to see a child that we had never seen.  His muscles were lose, he was happy and alert and awake for long periods of time.  His skin color was good, it wasn't see thru and yellowish.  He was able to do things physically that were amazing.  His heartrate stayed down.  His drainage was good.  Then the rip that child away and I want him back.  We don't have the quantity of time that we want, so why can't we have quality.  Why can't we work to make him as happy and healthy as possible during the time he has.
This morning his labs are back, blood and urine.  Nobody can read them and tell us.  We know that there is alot of red (high) and blue (low), but we don't know what it all means.  Everyone is rushing to get the doc to come over today and read it.  He is hopefully coming between noon and 5pm I'm being told.  I'm antsy and nervous.  It's not like this is a test for his vitamin D level or something, this is life and death.
We will update more as we know.  Updates have been a bit slower because I'm exhausted and worn out and tired of fighting.  I just want my baby to be as healthy as possible.  I want to take him home so the 7 of us as a family can spend as much QUALITY time together as possible.  We NEED this, all 7 of us.

Monday, January 17, 2011

Wedding Pictures

Here are 3 of our wedding pictures sneaks that we have so far.  I will pop on for an update later tonight.

Saturday, January 15, 2011

Quiet Day 14

Today was pretty quiet. We didn't do a whole lots. Eli has had some issue with his stoma being irritated and bleeding. He lost 7oz today!! Huge weight loss, which isn't good. His doc didn't round until 6pm tonight. Things have been slowed way back down again. There will be meetings happening on Monday supposedly to get a firm plan in place on how to best care for Eli at this point. He just cant seem to get enough fluids and nutrition. It's frustrating. He has spent alot of time resting and some time sitting up in his bed looking at books. We took him on a walk to day to the gift shop and he enjoyed looking at all the pretty things in there!
This evening bob and i spent some time getting everything ready for the wedding and now it's just time to relax a bit and enjoy the evening. tomorrow will be super duper busy!
here are a few pictures of mr eli from his day!
Tiny fell asleep reading a book again!

Right after bath being all smiley in his new pjs

Getting back to his room from his walk.  He was so happy to get his mask off!

Friday, January 14, 2011

Day 13 brings possible progress

First of all I went home last night thru this morning. It was a long night. Ari woke up at 2am freaking out about monsters in her room and under her bed. Her siblings put on a scary movie apparently and it scared her. So didn't get her back to bed until about 4am. So I slept a total of maybe 4 hrs. This morning I got to have breakfast with the kids and hang out with them for a few before school.
Then I took Ari to a friends house for the morning and part of the afternoon. I met up with 2 friends and tried on dressed and chatted. After picking out the perfect dress we went to have it altered. Then one of my good friends took me out to lunch and we ran a few errands before heading back up to the hospital.
So many things have happened today. A dress was donated to me, the hospital offered to make a wedding cake and cover the reception table and all the supplies for that. Flowers were provided by a good friend. Wedding photography is being provided by a good friend. So many people have been stepping up and offering themselves and to help out in any way possible. We feel so absolutely blessed to have so many amazing people in our life.

This evening Eli's surgeon came by. He was having some bleeding around his stoma. She said all looked good there and we discussed Eli and his progress. She sees no reason why we can't go home with TPN and IV fluids and says she will make some calls tomorrow and see what she can do. She said she would be willing to take the lead and be the one to follow him and monitor him and such. We are so excited to maybe being on the road to taking our little man home to be together as a family!
There will be a few more hurdles to cross with going home, but this will be one of the larger ones!

Tonight Bob and I are hoping to just relax a bit and watch a little bit of TV and hopefully get some sleep. Will update more tomorrow as we know more!

Thursday, January 13, 2011

Day 12 Update

Today has been a very busy day!
Eli~ His doc did rounds and it was a mess. She wanted to stop all TPN and IV fluids just to see how he would do. The nurses and other doctors and dietician AND bob and I advised against this and she didn't really listen. She was pushed hard and backed down on some things. She started slowing the TPN and has continued the IV fluids. By this evening the TPN was done. So now it's fluids and elecare. Everyone but the doc is against this plan.
We will re-group tomorrow and continue to fight this. Something has to give. Other than that tiny has had a pretty quiet day today.

Bob and I made our official announcement this morning. It goes along with the doctors advise of living each day to the fullest, as if it's your last. We had been planning to get married later in the year, but have decided that we want all of our friends and family with us, as healthy as possible, together. We will be getting married this coming Sunday. The support and excitement we have gotten from everyone has been overwhelming, although we will have to set up extra chairs because the guest list has expanded! :) We love it! We couldn't ask for better friends and family!

I am home this evening and Bob is at the hospital. I went to my knitting night and then came home to let my mom head home as she has 2 appts in the morning. I will run dress shopping with a friend in the morning and then head back to the hospital.
More updates as we know.
Tiny man sleeping with his book
Tiny man working during OT

Wednesday, January 12, 2011

11th Night

It has been a super long day.
Eli's had alot of visitors today.  A friend from my SnB(knitting night) came up and brought Eli some super cool blankets.  Paula his home health nurse came and spent some time cuddling with him.  Then his TA Waiver Manager, Monique came and read his chart and spent some time hanging out.  Then a friend of the family's came by and brought Eli a super cool sensory cube.  Then the evening ended with a new friend coming up and bringing some books and legos for Eli to play with and explore.  We had a nice time today visiting with friends and family! 
I also was able to go to my parents house for a few today and see our oldest 4 kiddos!  It was nice to get to see them for a few.

This evening Eli's neurologist came by and did a few physical exam pieces.  He discussed the test a bit more.  A few options after the blood work and urine tests will be a spinal tap possibly and the muscle biopsy.  We are trying not to worry to far ahead though as right now we need to just take things a piece at a time.  We now wait 2 to 3 days for these 1st tests to come back.

Tonight tiny is pretty tired so hoping he sleeps well.  Bob and I aren't far behind.
Visiting with the oldest 4 silly kids

A very sleepy tiny man after all his visitors

This is the toy our family friend brought up. Bob and eli were rolling it back and forth. Eli thought it was so funny.
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Meeting With Doc

Tiny's doc just did rounds.  Eli's lab work shows more dehydrated than he did yesterday yet we are giving him 1300ml's of fluid every 24hrs.  She doesn't quite get it either.  We talked about if there isn't significant progress by the end of the week then we will need to transfer.  She said that is fine.  We also discussed the Mito testing that is being done today, and the possibility of the Mito being the reason he is having a problem staying hydrated.  If that is the case then we can't fix it, we can simply continue to adjust with his body.  If that is the reason they will ultimately have to work out away to go home and be able to keep him properly hydrated between his J and keeping the port accessed.  Like always this is so much information to comprehend and "accept".  We are exhausted and so is Eli.  11 days in the hospital is like 10 years in the real world. 
Eli had speech this morning and they spent some time reading books with touch and feel objects for him as well as hand signals and such.  Eli was very happy with it because books are his favorite thing.  Then he had OT this afternoon.  They did some floor play on his pat.  He struggled with the moving and muscle stretches and such.  They ended with doing some songs with alot of hand play and that helped calm him back down.
We are waiting for neuro to come back this afternoon to run a full physical.  Also having to wait to do the las of Eli's lab draw this evening because they can only pull so much blood at once.
I will update when we know more.

Wednesday Day 11

I didn't get a chance to come back and wrap up yesterday, Tuesday Day 10.  He had a rough day.  Super fussy all day.  Since he was so fussy we did his "living each day to the fullest" in his room. 
Eli reading his book

Eli playing in his bath water
 Then late last night his new Neurologist showed up.  We had given up hope that he would be here as it was after 8pm.  We talked quite a bit and he couldn't believe they hadn't already done testing for Mito.  As he heard all of Eli's history he was like yup, duh.  He ordered urine tests and lots of lab work and we will have the results in 2-3 days.  Then will be the musce biopsy.  He has worked with a very well known Mito doctor and seems very informed and like he knows what he is talking about.  That made us very comfortable with him.  He is coming back today to do a full physical exam as Eli was finally sleeping when he got here. 

This morning Eli is wide awake and looking at his books.  He's on his J feed now at 20ml/hr, his TPN at 25ml/hr and then his IV fluids pumping everything back in that he is losing.  They just ran the 1st half of his labs and will have to do more in 12hrs since Eli is so tiny and they needed so much blood.  But all will be done before the day is over.

I promise to update better today!

Tuesday, January 11, 2011

Tuesday Day 10

Today is our 10th day.  I'm at the point of the stay where I'm just done and I want out.  I'm so tired of being here and so depressed by the lack of progress.  We are still stuck at 10ml/hr on the feeds and 25ml/hr on TPN, and then still giving IV fluids to supplement what is lost.  He's fussy today.  I want progress.  I want to work towards going home and we just continue to become more dependent on the port.  The opposite direction.
He had physical therapy and occupational therapy this morning and he just cried and cried.  They tried to work with his legs and hips a bit, and it caused him alot of pain.  They talked about ultimately trying some braces and such but not yet. 
He crashed after therapy and is now awake and crying again.  The doc still hasn't rounded yet today so no idea what the plan is now.  I will be pushing for them to get in touch with a GI, I don't care where in the country they are located at this point. 
Here is a pic of tiny this morning after therapy.
I will update today as we know more

Monday, January 10, 2011

Monday Day 9

It's been a fairly quiet day.  His doc rounded this morning and decided to stop the advancements of feeds right now.  He's still having a decent bit of diarrhea and alot of drainage from his Gtube.  When all of these are adding up he's losing so much more than he's taking in.  She decided to hold at the 10ml/hr for atleast 24hrs and see if it maybe gives things a chance to settle and catch up.  So we are in a holding pattern today and that's ok with us honestly.  I think it's good to give his body a bit of a break instead of constantly pushing to keep going. 
The doc also chatted about getting some calls and info going to some GI doctors.  So hopefully we will have that all figured out before the week is over.

Today it is snowing.  Lots of big beautiful snow flakes.  Eli has never seen snow.  So we begged his doctor and she said as long as he wore his TB resistant mask and bundled up we could go outside for a few!  After we checked out the snow we went for a walk to the chapel here at the hospital.  Eli loved looking at the stained glass windows.
Here is some pictures from Eli's day.
Tiny after his bath Day 9

Tiny as he was touching and exploring snow

Tiny checking out his 1st snow

The chapel where he loved the stained glass windows

Sunday, January 9, 2011

Sunday's All-in-One update

Sorry for the lack of updates today.  It's been a day that's just kind of passed.  Eli went up to 4ml/hr elecare mixed with 6ml/hr of pedialtye.  The TPN continued at 25ml/hr.  The dirty diapers began almost immediately again and lasted the morning.  We again added up all of the dipes and then anything over 200 gave back in the form of IV fluids.  He lost WAAAY more this time and we are having to give quite a darned bit back in IV fluids.  So the concern is the more we keep ramping up the feeds the more we have to keep giving back in the form of IV fluids.  So at what point do we need to continue again to slow back and figure out what is happening.  Tomorrow he will kick up again a bit on the feeds, only by 2.

His siblings got to come up and see him today.  they were here for about an hr.  It wore him out but he really enjoyed seeing them.  Then some friends brought us up some super yummy food and a gift for Eli this evening.  He enjoyed watching her 2 children as well.

Eli also had a 1st today.  It was his 1st time in 13 months of going out of his room and on a walk around the Peds floor.  His nurse got him a TB resistant mask and made a bed in a wagon and had all the patient doors closed and off we went.  I pushed the wagon and pulled his IV pole along and he loved it.  We walked for probably 30 plus minutes!!

His doc came by this morning as well and we have a plan set out for the week.  We will work on feeds obviously and will begin working on finding a new GI.  She's going to start doing some research and phone calls and such and hoping to be able to get files sent over and have a phone conference by the end of the week.  She is also hoping for Eli to get a day pass on Jan 19th to be able to go have another hearing test in a special booth.  The new neurologist comes tomorrow so we are really looking forward to what he has to say as well.

In closing I have a few thoughts on strength and weakness.  There has been alot of talk on 1 side, and a touch of talk on another side.  I am strong, but I'm not super woman and I do still have my breaking point where I just can't do it.  Sometimes I need help.  Sometimes I need someone else to be strong for awhile because I'm exhausted.  BUT this however doesn't mean I'm weak.  I'm so damn far from weak.  If I appear weak sometimes it's because I'm going thru the hardest point of my life.  This is shear torture and it's painful and it's hell.  That doesn't mean I'm weak, that means that it's hard, really fucking hard.  When I'm "weak" that means that for that exact moment I've allowed myself to 100% feel the emotions and really bear the weight of what is truely happening BUT that also means that someone else is being strong at that exact moment, be it 5 minutes or 5 hours.  Please don't perceive me as weak, for I am far from it.  If you see a moment that to you appears weak, please look at what is happening.  This is life and death here.  Also please don't assume I'm strong beyond all human recognition, I'm far from it.  I need help, I need support, I need to break down and scream and cry.  Call me, text me, email me, mail me handwritten letters, show up and haul my ass out of the room on a walk, do whatever you would want someone to do for you.  Always remember that I'm doing the best that I can and it's a minute by minute process and my emotions may change just as often but right now that's ok.  Just support me thru each step of it all.
Thank you!

Pics from our day!
Tiny after his morning bath

Tiny heading out for his 1st walk on Peds

Emily and Jace visiting

Ben checking Eli out

Ari loving on Tiny

Saturday, January 8, 2011

End of the Week update and reflections

It's been another long day.  Go figure.  Started his feeds at 2ml/hr mixed with 8ml/hr of pedialyte.  Then we ran the TPN at 25ml/hr.  Then we added up all of the diapers over an 8hr period and are doing IV drips for the amount that is over what we are putting in.  So basically anything over 200ml we are re-giving him in the form of IV fluids.  So currently he has IV fluids, TPN, and his formula and pedialyte running.  He's 1 hooked up little boy.
He had a burst of awake time and we got down on his mat to play.  Didn't take to long before he fell over on me and I propped him so he could check out the toy. 
His lab levels are still pretty low on quite a few things.  Hoping to continue to see those improve but currently he's still not receiving enough protein and calories and all of those things to see huge drastic improvements.
His O2 has been running a touch low for him, but not worrysome.  Tonight his heartrate is ridiculously low and setting off the monitors but now his O2 is back up nice and high.  Go figure. 
His doc did her rounds later in the afternoon so she could check in on how he was doing with his feed trial.  She came in closed the door, and sat down on the floor with us.  I knew it was time for another talk.  And sure enough she did.
We talked, this time I didn't cry.  I'm numb, or maybe just dry and dehydrated.  :)  I'm not sure.  But there were no tears.  I felt like running and screaming though.  Bob and I talked a bit after she left.  About our feelings.  About her conversation on balance and choices that we will face.  We don't yet know how we will handle those choices but it has now been brought to our attention that we need to always keep it in our mind and that there will be more talks.
I want to live in stupid bliss.  I want to pretend like I will wake up from this and it will all have been just a nightmare, a movie I saw showing someone else's life.  But I wake up each day to the beeping of his monitors, the water noises of his bubbler, the swishing of his many pumps, his nebulizer and the RT doing CPT, the nurses drawing labs to reorder his days TPN, and the buzz of the hospital life around us.  It's not a dream, it's my life.  More to the point it's us watching in awe at our strong tiny man fighting for his health and life...

almost forgot pictures.
Eli and I waiting for IR

Eli this morning after waking up

Bob and Eli hanging out this morning


Today is day 7.  Time is flying and dragging.
This morning we began his elecare trial again.  2ml elecare mixed with 8ml pedialtye for a total of 10ml an hr.  The doc would like to make it 24 hrs, we said we would try for 6 hrs.  Right now we are at 4 hrs.  He was crying the 1st hr, and these last 3 he's been a bit grunty but no crying.  Diapers started within 20 minutes of beginning.  He's pretty sleepy.
His labs this morning showed a few issues.  The problems were in the proteins and the muscles.  The doc said it shows that muscle mass/tone is incredibly low to dang near non existent.  Apparently one of the lab levels was so low they couldn't even pick it up on the test.  So not quite sure what we need to do about all that.
Waiting on the doc to round this afternoon so we can get some more info.  Will update as we know more.

Friday, January 7, 2011

Friday Night

It's friday night.  We've made it to evening.  We have alot of choices to make and alot of options.  We aren't sure what to do. 
I've been very panicky this evening about making the right choice.  This isn't what glasses to get, to try hearing aids or not, none of those things.  this is huge major GI system, major life issue, etc etc.  Once we make a choice there is no turning back.  Once we pick a road we can't turn around.  that terrifies the hell out of me.
i want a magic wand and i want it now.  i want to kick and scream and throw a fit.  i want to run in circles.  i want to cry.  i want to freak out.  i want it to stop.  i want time to stand still. 
we think we will have to go to bed and get back to thinking in the morning.  i don't know if i can handle it anymore.  we've gotta take a break.

Update 3:30pm..Friday

TPN still going. pedialyte barely going. thinking swelling and rash from not enough proteins. hoping to slowly increase the tpn "meat" over next few days. going for a GJ change at some point. Still trying to figure out the GI issues.  Doc has a few things that she is wanting to maybe try but if these 2 things don't work then she's out of tricks up her sleeve and we will either need to transfer to a children's hospital or we will go home on TPN and work to get into a GI specialist of our choice.
She's adding a special cream to put on his rash to see if that helps.  We are also going to start wrapping around his body to try and keep the GJ in place better.
OT and PT came this morning.  They were both really concerned about his hips, legs and feet.  He has low muscle tone and is very tight.  They are going to start him on range of motion and really working with him.  They both say he needs more intensive therapy than he's been receiving and are going to really push for that.  Touched on braces conversation but will see.  They brought him in a big floor mat that we can "play" on the flloor a bit.
RT is in here still every 4hrs and doing CPT.
Alright time to go down to radiology.

***Update 3:30pm

we are back from radiology. Figured out the problem with the G, but unsure with the J. He is wondering if eli is maybe having spasms in the intestines, and wondering if we should try an anti spasmotic drug before a feed and see if that makes any difference.
sadly all the tests are coming back not showing an issue but there clearly is one and nobody knows what so we can't fix it because of that.

Bad day

I apologize yesterday for the lack of updates.  It was an exhausting, draining, barely made it to the end kind of day.
Eli struggled a bit in PICU trying to get his TPN started, and his blood sugar and mag had problems. 
His doc came in yesterday morning and we all talked.  We talked for quite a bit.  We talked about things I have never wanted to talk about.  I never imagined these kinds of conversations.  You see them on TV, you assume parents of terminal children with cancer and such have these conversations, you read stories in books/magazines, BUT you never assume that would be you.  You never assume that would be about your child.  But it is.  It's me.  It's my child.  I don't want to do this.  I don't want this to be our road. 
We discussed Eli being a very sick child and that there is no way of fixing it.  There is no cure, there are no meds, there are no treatments per se.  There is no magic wand.  We discussed how each time Eli gets sick we never get back to our "baseline".  He never gets better.  He never moves past it.  Each time he gets sicker than any of the times before.  We talked.  We talked about living each day to the best that he can, and trying to make as much of each day since at this point nobody knows...  We talked.  We cried.  Then we cried some more.  Our doctors are always happy go lucky, life is good, he'll recover and be all better.  All of a sudden that is gone.  It's now he's sick and fragile and we can't fix it and we need to treat symptoms and keep him comfy and it's not going to be ok.  I don't know if I feel relieved that the doctors are now all on the same page or if I'm terrified.  I don't know how I feel.  I have so many feelings and emotions and I'm terrified as hell. 
We have really surrounded ourselves with Mito moms and all of our friends and family.  so many of the mito kids are struggling and some are at the end of the journey and it's heart breaking.  This is unfair.  It's cruel.  This shouldn't be the struggle that our little kiddos have to endure.  This shouldn't be what a parent has to go thru.  NOBODY should ever have to experience this.  Yet here we sit.  This journey has brought some of the most amazing people into our lives.  People I will forever consider a part of our family.  The lessons I've learned are amazing and beautiful and painful. 

He has one of his normal hospital nurses today so we know the day will go a bit smoother.  They have his TPN mixed better and up and running, and he seems to be doing pretty good with that.  He didn't tolerate 2cc of elecare in his J yesterday so that was all stopped.  We have no idea what's going on with his whole GI tract.  His local GI doc says she can't do it.  She said he's to complicated and she has no idea or how to help and that she can no longer help and see him as a patient.  All righty then.  So we are going to be spending the day to trying to find a GI doc who isn't scared by a medically complex kiddo.

I promise to be better about updates.  Yesterday was just so draining I couldn't post it all. 
I will close with a song suggested to us.  It is the unofficial mito kiddos anthem.  It sooo touched me.

Thursday, January 6, 2011

4:25am Thursday...i think thursday

Eli has "woke" if you call eyes barely open thrashing around in pain awake. Labs done to recheck blood sugar and glucose. His nurse is getting him toradol. I hate seeing my little guy in pain.
TPN has not been restarted, unsure when it will be trialed again.  Eli has a super amazing nurse today, a nurse we have again had for a large part of Eli's life. 
We are all struggling right now.  We are losing Eli piece by piece.  I've said it before and I say it again.  His doctors are agreeing and nobody knows how to make it stop.  Each time eli gets sick he never fully recovers.  We never completely get our boy back.  this terrifies me each time.  I never quite know where we will end.  our baseline always moves.  i wonder each time which piece we will lose.  and knowing in general that we are losing hearing and possibly eyes.  UGGGH. 
i'm going to start crying again which means here soon i'm going to end up dehyrated from tears.  so i will close with the below.
Tiny man cuddling with Bob this morning.  This is right after they gave him his toradol.  Between cuddling and toradol he's much calmer and sleeping now.

i also have to share this.  A fellow tubie friend shared this on my facebook page.  Our tubie community has gotten to be so close knit.  All of the babies are so dear to each of us.  This particular friend that posted, has a little guy who has Mito.  Her little guy is not doing well, and they are preparing for his passing.  This is something unimaginable to me, and so painful to even think about.  My heart goes out to her.  We have talked together many times and i just bawled watching and listening to this video.  I cried for her little guy, I cried for my little guy, I cried for all our tubie kiddos, and I cried for all of us as parents who are just making it minute by minute.  So I have to share this video here as well.

Wednesday, January 5, 2011


We are in PICU.  he's breathing on his own (well he has nasal canula, but you get the idea), BUT he hasn't woke up yet.  They started TPN and then rushed in and stopped it.  His blood sugar is low and his magnesium is super low.  He's back on IV fluids.  So now no TPN and no meds.  We are 100% NPO not using G or J.  IV running fairly slow (20ml/hr)  The intensivist is concerned.  We aren't completely sure what's going on or what the plan is.  i think they aren't quite sure either.  he's super puffy and hasn't peed for quite some time so watching him.
we will update as we can when we know more.

here is a picture of tiny man before surgery
Here is tiny man post op in the recovery room

Here is Eli in PICU

here is Eli for the few minutes that he was able to try TPN. (I know it's a goofy angle but one of the monitors is copyrighted so have to keep it out of pictures!)

out of surgery

Eli is technically out of surgery. They couldnt get him extubated. Finally got him extubated and he's not doing great. Hes on high flow mask and they cant get him to wake up. So here we wait, not being able to see him or get updates very often. They did get the port. Also did a scope and dont know what is happening. Shes going to start calling all docs she can for help. May need to transfer but dont know yet. He also failed his brain stem hearing test. Appears to be degenerative not med related. Moderate right now but most likely will degrade more. Will recheck in a few weeks and continue rechecking every 3 months.
Will update when we know more
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surgery started

surgery didn't start until almost 2 pm.  His surgeon had an emergency.  She's worried about Eli's surgery because of the pneumonia and complications eli has with lines and anesthesia.  anesthesia is concerned too.
they will do the port, brain stem hearing test, a scope of stomach and intestines, check the testicle that went back up, and fix and work on any problems she finds along the way. 
he will be intubated.  they wanted to avoid that because of the risk of spreading the pneumonia but they have no choice.  she said this won't be a fast surgery.
i'm scared, and she's very serious which always makes me nervous.  i know she will watch over my son as if he was her own because she always has in the past.  his docs are pretty protective of eli.
will update as we can.

Wednesday...Surgery Day

His doc decided to treat the pneumonia pretty aggressively.  they brought in another pump to be able to push the antibiotics thru without having to stop fluids.  Then we did nebs every 4hrs followed by 5 to 7 minutes of CPT.  He doesn't mind nebs, never has, but he wasn't fond of the CPT this time.  He's so exhausted and so miserable.  His 2am CPT had to be stopped because he was coughing so bad but he did much better at his 6am round.  He's resting fairly comfortably, and his temp is gone.
This morning will be a whirlwind of lots of stuff.  There will be alot of people in and out in a short period of time.  Surgery is scheduled for noon.  Luckily our nurse today is one that we have had since Eli was a week old, so we know him well.  Not sure who is on in PICU today but we know all of them as well.
I will update today as I can.

Tuesday, January 4, 2011

Tuesday **UPDATED 9pm

‎5hrs in radiology. I'm exhausted and so is tiny man. They did a small bowel follow thru and a gastric emptying study. No obstruction. They put the isotopes and liquid into his G tube and it started immediately pouring out the stoma. Ran the test with stuff pouring everywhere. Came back up and he started gagging and coughing up bile and isotopes. HUMPH.
 He screamed the entire time they put stuff thru his J and screamed until he pooped 1hr and 15min later. His nurse had to be called to come give him pain meds.
his surgeon who we have waited 48hrs to see came while we were gone. They are ...doing surgery tomorrow at noon. Also doing his hearing test while in surgery. They are concerned about his intestinal pain and stomach not working. We can't seem to put anything thru either.
the big concern is keeping the IV until surgery tomorrow. We are exhausted and so is tiny man. Everyone is confused and nobody knows whats happening and what to do next.

****UPDATED 9pm doc came by and we had a long talk. Eli is officially moved into the hospital long term. Tomorrow after surgery we will go straight to PICU. He has pneumonia and is coughing up puss and such. Who knows when we will hopefully move back into Peds in a long term room. I'm trying to grasp all of this, but it's not quite fitting in my head.

**UPDATED 11am...Eli's Tuesday Update

Here is my tiny man this morning cuddling with mommy while they changed his bedding.

Eli's cardiologist Dr Mo was in this morning already.  He had an EKG run.  Waiting on the results.  If the EKG shows normal and his O2 stays good he'll agree to the surgery.  If they aren't good and normal well then more talking needs to happen.  Going to continue keeping the O2 on to try and help keep his heartrate down.

Still waiting on the surgeon.

Eli peed this morning and just peed again in the UBag.  Waiting on labs.  He's still in alot of pain.  Having to do lots of pain meds.  Pulling up his legs alot and tightening up straight.  Going to do abdominal xray.  Fever is back, 101.4 

I did get sleep last night.  I slept from 10:30pm to 5:00am.  WOW. 

Will update as we know more.

***11am UPDATE
everything is in high gear now. eli not doing well. doc rounded. she's concerned. she called surgeon. surgeon is ready as soon as we are. going to radiology for testing. they think it's either pseudo obstruction and/or that his pylorus valve has sealed shut. everyone running in circles. plans made. everyone under the sun is calling each other. i'm scared. will update when we know more.

WOW 600 posts

This is my 600th post.  2011 marks the 5th year on my blog archive.  WOW.
I decided to do something slightly different.  Here is a look at Eli's year in hospitals.  (well the pics I have on facebook cause I don't have my computer.)
One of these days I need to sit down at home and go back thru all his pics and put together a journey slide show..
I will get an update in another post.  Happy 600th and many more.